Autistic children and their parents or caregivers are entitled to Covid-19 support

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The Covid-19 pandemic has wreaked havoc with the daily lives of autistic persons. Regulations to flatten the curve in South Africa caused drastic changes in the routines of autistic persons as early education centres (ECDs), schools and adult learning centres, as well as their parents and caregivers’ workplaces closed. The effect of the changes on childcare and participation in economic activities of parents and caregivers have had disastrous consequences for the physical and mental well-being of autistic persons and the anxiety about appropriate and safe care for their children experienced by parents and caregivers.

Autism is a neuro-developmental, lifelong condition characterised by difficulties in communication, social interaction and the need for sameness and predictability. It also manifests in sensory processing differences. There are varying levels of autism with differences in support needs, from low to high. During alert levels 5, 4 and 3, autistic persons have struggled to cope with the changes to their daily care to various degrees.

*Sizwe is a nineteen-year-old young man, residing with his mother in an apartment complex with a small garden. He stims which is a practice that allows him to self-regulate and for him, this involves talking and making loud noises outside in the garden. During alert level 5, their elderly neighbour complained to the body corporate, indicating that he was violating the nuisance rules of the complex. Since the lockdown regulations did not allow exercise outside of one’s home, his behaviour escalated. Without external intervention, he faced the risk of being arrested.

A plea by Disabled Persons Organisations to the President for a relaxation of exercise rules for autistic persons was not successful and only during level 4, with a small window for exercise in the mornings (when parents are often at work) and then during level 3 (until 6 pm) was there a limited reprieve.

*Oscar and *Tshepo, brothers aged 12 and seven, are on the autism spectrum. Their older sister, *Nandi, an adult with an intellectual disability and her 6-year old son, *Nkosikhona who is also on the spectrum, reside with them. The children’s mother, *Londi, is a nurse and single mother. During alert levels 5 and 4, she had no choice but to leave the three minors in the care of her adult daughter, while she continued working as an essential worker. Oscar has very high support needs while the two younger children are still toilet training and wearing nappies. All three boys were traumatised by the change in routine and suffered meltdowns which can involve self-injurious behaviour and damage to property. 

This even escalated to a point when Oscar climbed the roof of their building and the fire department was called to rescue him. Londi received numerous complaints from neighbours and their security company about the behaviour of and safety concerns for the children. Her application to her employer to be allowed permission to take paid leave in order to care for her children and grandchild while their daycare was closed was not successful. The option of unpaid leave would leave the family without an income. Londi had to continue going to work and leaving her children in dangerous circumstances. She eventually contracted COVID-19.

*Dennis, a four-year-old boy, is diagnosed with level 3 autism which means he requires daily one-on-one facilitation and support. This means he requires support in every aspect of his life, including toileting, bathing, eating and day to day executive functioning, impulsivity control and managing his anxiety. His mother, a member of the South African Police Service (SAPS), rendering essential services throughout the lockdown period, could no longer rely on childcare by his father when he had to return to work under alert level 3. With specialised ECD not yet available to her son, she applied to be considered as a ‘Covid-19 vulnerable employee’ under SAPS procedures, which would allow her to care for her son at home until ECD reopens.  She awaits the outcome of this application.

South African workplaces and communities were ill-equipped for the impact of Covid-19 on childcare, home life and work for families with autistic persons. While our labour laws recognise the family responsibility and need for reasonable accommodation of parents and caregivers of children with disabilities, during the Covid-pandemic, a lot of uncertainty as to whether these protections are still available to families arose. Government’s declaration of a national state of disaster does not suspend the exercise of our human rights as happens in a state of emergency. Instead, adjustments to how we operate have been required. With government and workplace restrictions on freedom of movement, community living and the workplace, and the closure of ECDs, schools, adult learning centres as well as restrictions on networks of support such as childcare by family members or friends, parents and caregivers of autistic persons have been left with unconscionable decisions – not earning a living or leaving their children in potentially dangerous child care arrangements. Fortunately, some workplaces have developed protocols and procedures that take cognisance of this impact and have adapted workplace rules to cater for employees with family responsibility. 

Some communities have embraced the need for a ‘physically distant’ ubuntu, which is a recognition of the dignity of all persons and the fact that some persons are more harshly affected by Covid-restrictions than others. Others, however, have not done so, with dire consequences for families facing continued stigma and harassment from neighbours or unsafe childcare conditions for their children. While interventions by Disabled Persons Organisations, such as Action in Autism, have assisted families such as those of Sizwe and Dennis by providing information on the effects of autism on childcare and daily living to employers and community members, an ad hoc approach is not sustainable.

The Employment Equity Act 55 of 1998, the Labour Relations Act 66 of 1995, the Promotion of Equality and Prohibition of Unfair Discrimination Act 4 of 2000 and their regulations and guidelines all provide legislative protections to affected families.  We call on workplaces and community members to take cognisance of these protections that recognise the family responsibility and need for reasonable accommodations of affected families at home, in communities and at work. 

Further, we call on them, where needed, to adapt rules and protocols and restore supportive relationships with affected families during the Covid-era. Such an approach will ensure that the human rights of autistic persons to dignity and equality are promoted. Where employers and community members violate these rights, parents and caregivers may have to resort to legal remedies at the CCMA, Labour Courts and Equality Courts, sometimes approaching private attorneys or law clinics such as university law clinics or non-governmental law clinics such as the Legal Resources Centre or Section27. Alternatively, recourse to complaints mechanisms of the South African Human Rights Commission or Public Protector’s Office may be had.

Willene Holness is a senior lecturer of the School of Law, University of KwaZulu-Natal, an admitted attorney and a board member of the Shahumna Adult Business Transference Skills Centre (for Autistic adults) in Durban. She writes in her personal capacity.

Liza Aziz, a disability advocate, is the founder and chairperson of Action in Autism, a non-profit organisation that serves autistic persons and their families by providing support, learning, services and resources, including an Early Childhood Education and Adult Learning Centre based in Durban. 

*The names of the adults and children have been changed to protect their identities.